Donor follow up

[jmaurer]

Hello all. Is anyone else concerned with the complete lack of donor follow up from the transplant hospitals? Going into this process, I was repeatedly assured about how great donors do in the years following transplant but my question now is...how would they know??  I saw the doctors from my transplant hospital one year post surgery and have been on my own ever since. I go for yearly check ups and blood work with my general practitioner but have never been asked to share my results with anyone. After almost five years, my recent blood work shows my creatinine below 1.0 for the first time. Every other year, my labs were tagged with stage 1 CKD, which I know would only be meaningful if I had two kidneys, but still gave me concern every time I saw it.  I feel like there should be follow up for at least five years to give future potential donors a better idea of what to expect in the years post transplant. They should be tracking creatinine levels and other possible side effects (fatigue for me) in order to really know how donors are following donation.

I've been thinking about this a lot lately and just thought I would share my two cents.

[Karol]

Yes, this is unfortunately not unusual. I hope you continue to get checked whether you're followed or not, but also keep talking about it. Things need to change.
Congrats on the great creatinine number!

[Michael]

If the transplant center is in the US and receives Medicare reimbursement, they are obligated to follow up with you after 6 months, one year, and two years. Did that happen?

[elephant]

Dear jmaurer,

I have had the same frustrating experience.  In fact when I tried calling at 6mos and scheduling a followup I was discouraged from coming to the transplant center. Then at a year when I was having health problems and called I was again discouraged.  Love, elephant

[jmaurer]

I had my surgery at university of Pennsylvania Hospital and like Elephant, I had to force my way in at 6 months and one year for checkups. It took several frustrating phone calls to schedule my follow up until I got in. There was no two year follow up appointment. I have been lucky with my health post-donation but I know that not everyone fares as well and while I want to encourage living donation, I feel strongly that there is not enough follow up now that I am on the other side. Not sure how to channel this feeling but I'm glad to hear that I'm not the only one concerned with this issue!

[Michael]

Follow up has been atrocious, despite the requirements of the Medicare Final Rule issued in 2007. Statistics show it. UNOS knows it. They issued new "requirements" to set higher standards for reporting, and we'll have to see if that makes a difference.

Personally, I feel the only thing that will change the behavior of the transplant centers is enforcement, and that comes from alerting Medicare to violations of the Final Rule. I'm considering starting a campaign that alerts the Medicare Inspector General when a living donor does not receive follow up at the required six month, one year, and two year intervals. But it also requires the living donor to stay in contact with the transplant center; we have responsibilities, too. In theory, a hospital should lose its Medicare certification if the transplant center doesn't follow the requirements of the Final Rule (which also includes requirements for an Independent Donor Advocate, nutritional education, and so on).

Are you ready to invest the time and energy to make trouble for non-compliant transplant programs?

[PastorJeff]

Could you be more specific about this final rule?  Where can I read up on it?  Thanks. 

[Michael]

Here's the full official document: http://www.gpo.gov/fdsys/pkg/FR-2007-03-30/pdf/07-1435.pdf

Selections with commentary: http://www.livingdonor101.com/medicare.shtml

Happy reading! 

[PastorJeff]

Thanks a lot for the quick reply

[PhilHoover]

I had terrific follow up with University of Alabama-Birmingham for the two-year period that was required.  I knew this before I became a living donor. 

[jmaurer]

I find it interesting that in the 2nd link you posted, it says that 78% of transplant hospitals don't want to be involved if problems arise with the donor and prefer them to see their GP, which may lead them to be unaware of problems donors encounter.

I would be willing to report my hospital to Medicare but fear that it's probably a bit late since I am five years out. I wasn't aware that they were obligated to see me at two years since I had to fight for my one year follow up and was not asked to make a future appointment. 

Maybe I'm just basing my judgement on my poor follow up, as it seems that some hospitals are meeting the requirements. I do think that donors should be tracked for more than two years, especially as we begin to age.  Not saying that this is the responsibility of the transplant hospital but would like to see some sort of donor database where we can send our yearly labs (I have mine done through my family doctor) and the data could be analyzed to give a clearer picture of our health post donation. Probably unrealistic but it's something that I feel is needed.

[elephant]

My two-year anniversary is in two weeks; I haven't heard from Columbia Presbyterian yet and really do not expect to.  Maybe they will surprise me next week.   As soon as the date passes, I'll call the transplant unit and let you know what I'm told. 

I have the same address, phone number and email as I did at donation, but maybe they "can't find"  me.

love, elephant

[flacapt]

Elephant
Did they contact you?

My one year is this fall and Mayo in Jax is doing their part and I am scheduled already, however, I do wonder about the two year (long way off) because I never have been told we are to have a two year. Good to know!
Thanks
M

[Vickie]

I too am concerned about the lack of follow up. I had labs and saw the surgeon at 3 months, yesterday marked 1 year and I haven't heard from the transplant center since the 3 month check-up. 
Vickie

[elephant]

Dear flacapt ,

I've passed my two year anniversary and did not hear from Columbia Presbyterian.  I have the same email, phone and address as when I donated. 

I do know what my blood work would show since I had a full round of tests recently because of my ulcerative colitis. 

Still it would be nice to get a "How are you doing?" call...I'll try calling them and asking but am not expecting much.

My recipient, however, was quite happy to celebrate our anniversary together.
We combined it with mother's day and everyone came to my house.   

I'm not ungrateful to CP, they docs there did a great job! 

love, elephant